Tuesday, September 27, 2011

that’s when I realize that I’m out of any human reach——-out of the reach of rescue, but not out of harms way. You can’t kiss stuff like this and make it better—–sure, you could kiss it but what difference would that make? Kiss it and make it the same. Carrie Fisher

Thanks for showing up for the September Disability Blog Carnival ~ I had such fun (and a few minutes of trepidation, I won't lie) putting this together, and I hope there's something here that is meaningful to you.I had the tentative theme of Being Seen, and I think we managed to get some great posts that address just that.

I'm going to start off with a rather sociologically bent contribution,Embodied Ontology Model: A Way Forward, which was suggested by Jon. Although it focuses most specifically on the Deaf community and its needs, I think its ontological perspective is pretty compelling for anybody who's interested in the larger sphere of dis/ability. There's a lot of talk about the pros and cons of the medical vs social model of disability, and the gaps that people can fall into if you're looking at it in an either or type of way:

The desire to belong and to fit into society is a strong human need...Recognition of difference, or ...‘otherness’ is crucial for minority groups in negotiating their place to ‘belong’ in the diverse cultural landscape... Yet there is considerable resistance or social inertia to acceptance of any form of difference within society.

I think there's a lot of interesting stuff here about being seen: wanting to be accepted, to belong, but also to have the recognition of differences, and the making a space for (or, alternatively, isolating) those differences along the way. It's definitely thought provoking.

One of the more interesting aspects of being seen, for those of us with 'invisible' illnesses, is the idea of disclosing: How and why and when do you tell people about this part of yourself? Leslie, at Getting Closer to Myself, discusses disclosing, and her specific hows and whens, in this recent post . She's so honest about the need for connection, and the vulnerability that you can feel in those situations: it's definitely worth a read.

The ever-wonderful Laurie, over at A Chronic Dose, has a provides her thoughts on disclosing as well, both as a teacher and as someone who suffers from chronic illnesses.

Next, I'm including a post from the uber-famous Bloggess, about how it feels (to her) to be living through an RA flare, for a couple of reasons. For one, as a person with FM, I'm all too familiar with the hideousness of flares and her words really resonated with me:

"Life passes. Then comes the depression. The feeling that you’ll never be right again. The fear that these outbreaks will become more familiar, or worse, never go away. You’re so tired from fighting that you start to listen to all the little lies your brain tells you. The ones that say that you’re a drain on your family. The ones that say that it’s all in your head. The ones that say that if you were stronger or better this wouldn’t be happening to you. The ones that say that there’s a reason why your body is trying to kill you, and that you should just stop all the injections and steroids and drugs and therapies."

and made me wish I had someone in my life to tell me "“It might be easier, but it wouldn’t be better.” Secondly, since we're talking about Being Seen, I thought it was important to note that such a prominent blogger was able to shine a spotlight on something that doesn't often get discussed. To me, seeing that there are other people out there who get it? Is vital.

Here's a poem Megan at Mirrored Lens posted for Invisible Illness Awareness week, about wanting your doctor to see you (but I know my eyes plead fix me) that I think many of us can relate to.

thatwordgirl spends some time talking about how she wants to be seen, and how she can make herself be seen differently, in this post about being the It Girl. I envy her her costume geekery: although I've gone so far as to paint the Batgirl insignia on my hands for the trick or treaters, I'm not quite bold enough to go full-out Oracle for Halloween.

This post, by Wheelchair Dancer, about the audience's reaction to the dancing vs. her own perception of it is illuminating. I've seen some of those "weaker choreographed" pieces (not from that troupe specifically, but in my internet travels, certainly), where the dancers in wheelchairs somehow seem to be props for the more 'able bodied' members to show off around. And they're kind of heartbreaking. Because I've also seen the wonderfully choreographed ones (and am now wishing I could find them - YouTube, why aren't you cooperating?), where the chairs are neither props nor handicaps, and all of the dancers dance.

"Nobody has to say, "I wasn't thinking," because they don't have to think . . . about disability. About us. That's what ableism is about. That's what privilege means: not having to think about what you don't struggle with."

Surely it's hard for people with disabilities to be seen if they can't even access opportunities to tell their stories?

And on the subject of telling stories for PWD, I wanted to point out this post, by s.e. smith, because I'm a total bibliophile, and this discussion of Mental Illness in Young Adult literature added more than one book to my TBR pile. Since books mean so much to me, and there's so many just plain bad - poorly written, stereotypical, not at all feasible, miracle cured! - books out there about people with disabilities (for all age groups: I did my thesis on disability representation in picture books, and there was more than one groan-worthy inclusion, let me tell you), I am so glad when someone gives kudos to authors who are doing it right. As smith says "These characters were carefully researched and sensitively depicted, in a way that resonated for many readers."

Thank you all so much for coming to this edition of the Disability Blog Carnival! Next month's edition will be hosted by Spaz Girl (Cara) at Butterfly Dreams. I know she and Penny will keep us posted.

Then she said, “You know, it’s so funny. What keeps any of those people in that dining room from being like me is just a virus, a thing in my body over which I had no control. Why did I get it and not them? Fate. Circumstance. Luck. But I have a place on the earth, just as they do. I have rights. ... When the shrink talked about how the disease would affect my personality, I talked about how my personality would affect the disease. I didn’t understand why nobody… I kept thinking, ‘I am me! I am still me!’” Her voice began to shake and she closed her eyes, then opened them. “Wipe my tears away and give me a chocolate,” she said." Elizabeth Berg: We Are All Welcome Here

Friday, September 23, 2011

Nope. Nope, I'm not going to go on and on about how I should be posting more - a) there aren't any shoulds out here in the Wild Wild West.com of blogs, and b) I am doing what I can, so that's going to have to be enough. And also: I realize the guilt I feel is coming from me and not some clamoring of readers who are demanding that I provide them with words to read every ten seconds, so I'm going to just try to cut myself a break or two here... for at least this paragraph.

On to new deals - Things here are going ok-ish. By which I mean all of my old problems still exist, and new ones continue to crop up: You know SSDD. For the most part, though, I'm recovering from my fall (almost a whole damn month ago now), with frustrating slowness, but still recovering so I'm going to just take what I can get there.

In the good news department, my cousin - the one who has been on bed rest for the past 4 months because every time she got up she had contractions - has safely given birth to a very healthy, full term baby boy. This is majorly good news, and I"m hoping to get over to visit the little guy and his mama at some point today (if I can bear to put on my bra long enough to accomplish said task). Some sacrifices must be made, and between her bed rest and my not leaving the house nearly ever, it'll be an adventure, that's for sure. Of course, at the end of her adventure, she gets to go home with a little cuddly cutie, and I get to think up creative ways to get my bra off in the car without anybody noticing, so it's not exactly an equality type situation, but what are you gonna do?

I also want to remind people that I'm hosting the Disability Blog Carnival next week, the deadline is Tuesday the 27th, and I am going to swallow my pride a little here and say that there have been very few contributions, and I could use as many of you who would like to participate as possible. Again, you can leave your links on this original post , or send them to my e-mail, link above. I'd really appreciate it.

Somehow or other it's turned out to be Friday again, so have a great weekend everybody!

Monday, September 12, 2011

If only that title was a movie reference or something. Nope: I literally fell over backwards. About two weeks ago, we took the kids to a local low-key amusement park, I got out of the car and into my chair, put my front two wheels up on the curb, thinking that Mum was right behind me, lifting up the back two wheels - like we do a million times, all the time - but she had turned back to the car instead, and I somehow lost my balance, tipped back, slid up out of the chair a bit & my head and upper back met the concrete in an intense and immediate way. Besides being shocking - What the what??? - and completely embarrassing (although some very nice older gentlemen came rushing to help and made lots of jokes about revoking my license and ha ha, not uncomfortable at all!!!), it was.. majorly painful. "Majorly painful" is, in fact, the most definitive of understatements, but since I can't think of an all encompassing word for how bad I have felt since then, it will have to do.

After a few hours of trying to be in total denial ("I'm fine; let's go play skee ball!!) and downing both migraine & pain meds, I realized that I was in fact doing the opposite of fine, and I got myself all checked out at the ER. Where a snippy nurse tried to insist on getting my weight (No: I do not stand up well on good days, today is a very bad day, screw off, sir and take your "but you look fat to me, so I have to know the number" attitude with you); I got to spend a few hours looking at screwed up wall murals and trying to figure out if if it was me or them that was off (It was them); and a very nice doctor ran me through the CAT scan, pronounced me mildly concussed and apologized for the fact that fibro + fall = major suck, and sent me home.

Where fibro + fall has, in fact, equaled complete and total suckage. Although I was kind of shockingly unbruised, the part of my back that hit the ground has been untouchable. As in, I've been wearing button down shirts backwards and unbuttoned for two weeks, keeping my door closed so I can be a lay around Lady Godiva, because holy hell clothing is not allowed to touch that part of me. I've attempted attacking with every painkiller in my arsenal, but it's not doing much. That's not true: it's helping more now, but those first few days, it was like I was taking baby aspirin, or sugar pills, or swallowing pieces of paper, for all the good it did. I never even felt them. My back/neck have always been my most sensitive spots, but there have only been two or three times the pain has been this bad - mostly when I've been sick or flaring in other ways - and never due to something that I had done to myself. It's not exaggerating in anyway to say that I am not sure how I got through those days. Those first three days, there wasn't a person here - it was all just a big pulsing block of pain - I don't even know.

And then, when the pain had dialed back a bit just enough that I could put my eyes on a piece of paper and focus on them, I took myself as far away as I could go, and wandered through all 40 or so (the ones I have here) of J. D. Robb's In Death series. Started back at the beginning of 2058 with Lt. Eve Dallas and all her cohort, and tried to live with them through the next three years or so of her life, so I wouldn't have to be in mine. I know I talk about reading a lot, and how important it is, and it gets to be all blah blah blah books, but if I didn't have a place to escape to, if my mind didn't have a chance to just shut down and follow Dallas and Peabody and all the rest through their cases and humor and horrors and becoming a family, if I couldn't escape the pain by going there, or to Hogwarts, or to Avonlea, or Concord during the Civil War - I don't think I'd still be around to live through things. And that's just plain truth. (Also honest truth? If you haven't read the In Deaths, you are majorly missing out ~ can not recommend them enough!)

I'm doing better now, tiny bits at a time - still avoiding shirts at all instances (which is not me-like at all, I must confess, and feels incredibly odd) and popping whatever pills are left in my stock, but bit by bit, getting better. It's still complicated since I can't lay on my back, and I can't normally sit up for too long anyways, and either side has time limits on how long I can lean on them, so it's complicated, but it's improving. Talked to a couple of people on the phone, so they would know I wasn't dead. Checking back in here, and in other online spaces, to see what I've missed. Reading voraciously through my poor neglected Google Reader. Actually turned the TV on this morning - before the noise and mess and lights and all that were too much, too confusing - to find a 98% filled DVR: unacceptable with new seasons starting, missy. So I'm battling back, and I just wanted to say hey!

And to remind everybody about the Disability Blog Carnival, hosted here, by moi, in just a few weeks. Keep me busy people ~ Help me catch up on some posts that I've missed!